Lifelong Learning Programme

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Training > Experiences

Personal Experience

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He was so beautiful and he already had plenty of energy

Language: English
Country: Italy
Typology: patients and relatives
I am forty-five years old and I was born and have lived in Turin. Narrating one’s own life is a bit difficult, especially if it is rich and intense as I consider mine has been so far. I will, therefore, concentrate on the moment that has shaken all my projects, my expectations, my, so to speak, carefree life. This moment is not the one when I found out I had diabetes mellitus, which could alone have shocked me, because I have accepted the disease without letting people influence me in my choices more than it was due. The true important moment was the decision to have a son. I said “decision”, since, precisely because of diabetes, I had to plan this pregnancy together with my husband. It was not easy and it has not left me the good memories that such an experience should leave. Mirko was born in the twenty-ninth week, after six months passed, for one quarter, in hospital, trying to do everything possible to ensure that everything would go well, but that was not the case. Thus, the memory I have of childbirth is, I think, the worst of my life, this makes me suffer a lot, particularly when I hear other moms describing it as a painful thing, but full of happiness. After a night spent at the mercy of an incompetent nurse, who ignored all the signals that it was her task to recognize, I was brought to the emergency operating room to be submitted to a caesarean section. While I was already lying on the operating table, they found out the small Mirko (small in the true sense of the word, because he weighed Kg. 1.260) had already taken the road to the main exit. Therefore, with nobody next to him (my husband and my mother were outside the operating room where they could hear me cry and wondered why, since I should have been under anaesthetic), this little thing came into the world, in great silence, because he did not weep and I could not even see him, as if he had come out from the body of someone else. Thus, a child who should have been put immediately into an incubator, due to the poor organization of the hospital, waited for more than four hours before being transported to the infant hospital and receive the appropriate treatment. Having said that, I think you will agree with me in thinking that it was a bad day and it was certainly a time when my life took another direction. But, there is always a but, I am an optimistic person: since the first moment I could see him, even if through a window, I have fallen in love with him and I started to fight for him and with him, more than just to hope. Difficult moments were not over, instead, we were only at the beginning, in fact, after a few days, after they told us he was good and had not suffered any damage, the day after, in the corridor, among the relatives of other children in the hospital, they told us: "Sorry, but we were wrong: your son has had a brain suffering; we do not know how he will be like, if he can speak, if he can walk, we do not know to quantify the damage". But, there is always a but, he was so beautiful and we already saw that he had plenty of energy. We did not lose heart and we started our path, among a thousand difficulties, often making difficult decisions, such as that of quitting my job, to be able to follow him closer. For several years, I have lived with a deep sense of guilt, asking myself questions that, I know now, were meaningless: "If I had done this or that way, if I had worked less, perhaps this would not have happened”, until the day when, after I was hospitalized with Mirko in a big rehabilitation centre, after the first operation on his legs, a doctor, between tears, let me look at the report of Mirko’s magnetic resonance, while hugging me and sharing my pain and my relief. Few words were enough: "Pre and post birth suffering", they had waited too long, both before and after. This was an important moment, because it meant shaking away the sense of guilt and putting the blame on the negligence of a structure, which I had trusted with confidence. I started all over again with a new awareness of the responsibilities for what had happened and with a new strength. The path to get here has been long. Mirko has already been submitted to three operation on his legs, has had to learn again to walk for three times and it is not over yet, in fact, next week he will be submitted to the fourth intervention. But he has become strong, brave, stubborn, determined, and with a great desire to live and a radiating enthusiasm. He is learning to live with his difficulties, to understand that he can do many things, but, as for others, he must reach a compromise, when playing tennis, for example: he can play, in a wheelchair, in order to accept himself as he is. It is not easy, especially now during adolescence, when children quickly learn how to hurt you and in a moment of anger they can tell you: "It's all your fault if I’m handicapped". These words are strong, difficult to accept, then you make him reflect and you understand he has got it. I am teaching him to fight, alone or with the help of his friends or classmates, in order to obtain the things that should be guaranteed to everybody and instead are not, such as, for example, an entrance at school without architectural barriers; if it is important for the other guys, it is fundamental for him. I would like to tell you about an event that happened at school, to give you an idea of how the same day can be lived by a disabled boy as a loser or as a winner. Mirko attends the second year of secondary school and every year in this school in November there is the country race. Last year, naively, I assumed that they had thought of a way to integrate him, while, probably, not because of meanness, but certainly with a bit of superficiality, Mirko could not run, so he just looked at the race, and this was not his choice. Given his difficulties, they took it for granted that he could be only a supporter. This event, that I wanted to highlight, pushed several teachers and the school headmistress to make many reflections and made me, as a parent, aware of the need to speak with those involved in the integration process in the moment of programming these things. Also this year the time for the country race arrived, the difference was that the professor in charge of the organization of the race asked me what I suggested the nineteen kids with disabilities attending secondary school should do. I greatly appreciated this approach, because it represents a first step on the path that teachers and parents should follow together to achieve good integration. So, after consulting other parents, I suggested that the boys who felt up to the race should have the chance to run with their class group, while those who did not feel up to it should anyway play an active role, so that they could participate in the event. For example, given the passion that Mirko has for taking photos, I asked if we could be given the task of taking photos. So, that morning he arrived at school with all his equipment and, in the end, he took three hundred photographs of all the participants. I believe that it was an unforgettable day for him, also because, then, while watching the photos portraying the teachers, they noticed that they were really good, thus discovering one of Mirko’s capabilities, that they would possibly encourage. He was promoted as official photographer of the school, and he was given that task also on other occasions, such as swimming competitions, the opening of the school, etc. This gratified him a lot and made him feel important. Certainly, this experience enabled him to strengthen his self-esteem and improve his image, not only in the eyes of his mates, but also of the students of other classes. I think that this event conveys the idea of how, through the eyes of a boy like Mirko, we can see an attitude of frustration or resignation or, otherwise, of satisfaction, pride and happiness. To do this, it was enough to understand that the knowledge we have of our children derives from the experience of a life spent with them on dealing with a lot of battles, and not from the presumption of being able to replace doctors or teachers.

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